I cannot stand on my feet an longer than 15-20 minutes before they are absolutely killing me. My diagnosis are AS, Fibromyalgia, sjogrens, Raynauds, and neuropathy. I hear how people describe neuropathy as pins and needles but I don’t have that. I never know how to explain it but my feet just hurt and the longer I’m on them the more swollen and red and hot they become. I have to literally plan each day around my feet, meaning I have to decide what hideous shoes to… read more
@A MySpondylitisTeam Member
I empathize with you. My pain is nowhere near where yours appears to be. Neuropathy is typically described as pins and needles but I've heard people describe hot, shooting pain and sensation of "ants." Wish I could give you an educated guess as to what is causing your severe symptoms.
Do I feel totally alone?
Great question! When I was younger there were times when I felt totally alone. As I've matured I've learned to enjoy the solitude of being alone with my thoughts or a project. When I'm in pain I don't want to be bothered or expend energy conversing or engaging with others. I just want to be left alone.
I think what I hear you saying is you feel alone and invisible. As though people around you are unaware or prefer to be oblivious to your chronic medical conditions. It's "typical" for family and friends to minimize our chronic medical condition because, "You don't look sick." No one wants to face the possibility that this can happen to them or, that it's happening to you! On the other side, it may be painful and distressing for others to watch you struggle and not know what to say or how to offer support.
If you want to adjust the attitudes of those around you, you'll want to begin by sharing information. Use the articles printed in the "Resource" section. You'll want to let others know you have limits. You will learn to say, "No" and mean it. You will gain skills to become assertive. Getting proper rest, nutrition and keeping medical appointments is your priority.
This site is a wonderful 1st step in learning to understand limits and why that's important. Ask questions, invite people to be on your Team. This is a safe place for you to rant, rave, and get it off your chest. It's also a great place to learn how others handle similar situations to yours. Since most of us don't sleep because of pain, we're up at all hours of the day and night. Log-on and someone will be here.
You have described perfectly how my feet have been for over 40 years! I started with a burning sensation in the ball of my feet if I wore high heels at 17/18, which went away if I wore my Scholls (remember those?!) for a day or so. Then as I grew older my entire sole would burn like hell at night, not painful to walk on like the ball of foot pain, but still there and my GP just shrugged, refusing to refer me, even though I had other symptoms, he said they weren't related and he had no idea what was causing it...so that was that! But, where mine differs is that they're not red and swollen. However, I know someone whose feet do swell and are red, my cousin's daughter and she was also diagnosed with Sjogrens about 5 years ago, a part of that is the Raynauds which affects the hands and feet, causing symptoms as you describe, so not caused by the neuropathy, but the Sjogrens and Raynauds. Your doctor should be able to refer you for special socks and gloves, as well as treatments which will help to ease the pain.
As for feeling alone, not really, even though like you I have a small family, just me, my daughters, one son-in-law, a grandson and an estranged brother, but I do have an excellent friends support work and adopted family. I don't however, get invited to much these days because I either don't feel that I can go and end up cancelling plans or have to leave early due to pain. Those who know me well understand and anyone else can just go jump as far as I'm concerned.
Could work cut your hours or could you work from home on so many days a week? Job share maybe? A friend of ours we class as family has Ankylosing Spondylitis (she was diagnosed at 11 and is now 34) and her employers have accommodated her by arranging job share and she works three days 9-5. I know it's hard to motivate yourself when you're in pain and exhausted, but don't let it affect your relationship with your husband. On days where he wants to do something, explain that you need a power nap or a 10 minute break where you sit and maybe meditate, relaxing and deep breathing, then agree to go armed with painkillers and anything to help ease the pain. I know it's like giving in, but how about a mobility scooter? I finally admitted that I couldn't do walking around anymore and have now begun to look into getting one. If it helps to get you out of the house, why not?
Similar problems here especially the neuropathy caused by back issues? Off balance & back pain. Try to do as much as possible, you have to push. I grab my cane & go, I always feel better once I'm out. I sit a lot but keep going. Don't give up!
I have Venuous Insifiecency often misdiagnosed as something else swollen(fluid retention) 70 lbs give or take. Skin thinning on legs feet I sometimes where shoes 2x larger because they don't fit in my size. I'm swollen everywhere. Skin reddish brown but always red. Legs feet hurt 24 7. It's painful chronic and Drs won't give meds for pain just water pills. It's similar to varicous veins but they do little for me. Blood goes down but has prob getting back up to heart..
All I can do anymore is walk. I started out struggling to do an 1/8 mile and that was with back and neck brace on. Every day I got a little further. When I got past the 10000 steps my weight started coming off. I know they say 10000 steps is not needed but it is magic number for me. Was I not in pain when walk , no I was in miserable pain carried a cane (sometimes two) to wait through the pain. Why do it well I was in tons of pain sitting in my chair. Am I out of pain after getting my BMI into acceptable levels? No still have pain but it’s much less and I am strong enough to ‘ walk off the pain’ on some of the occasions. I was luck to live in the desert where the heat and everything being flat helped. One step at a time.